Friday, September 9, 2016

Disability groups seek to intervene in teen's plan to die

APPLETON, Wis. — Disability rights groups are attempting to intervene in an Appleton teenager’s decision to cease medical treatment and die of the incurable disease that has racked her body and left her in constant pain.

Carrie Ann Lucas, executive director of the Colorado-based Disabled Parents Rights, said her organization is one of several that have asked for child-protection authorities to investigate the case of 14-year-old Jerika Bolen, whose decision to enter hospice care at the end of summer gained national attention.

“A child doesn’t have the capacity to make those types of decisions, and under the eyes of the law, this is a child,” Lucas said Tuesday.

Jerika suffers from Spinal Muscular Atrophy Type 2. She and her mother, Jen Bolen, said earlier this summer that Jerika would go without her ventilator while under hospice care in early September, essentially scheduling her own death. Her story drew an outpouring of support when her family, friends and her care team held a prom, dubbed Jerika's Last Dance, in late July.

On Tuesday, Jen Bolen asked for privacy and declined further comment about her daughter's medical care.

Melissa
Blom, director of Outagamie County’s Children, Youth and Families
Division, also declined comment on whether her office has received a
referral or opened an investigation, citing the confidentiality of
child-welfare cases.

Jerika was diagnosed as a baby with Spinal
Muscular Atrophy, often referred to as SMA. The incurable disease
destroys nerve cells in the brain stem and spinal cord that control
voluntary muscle activity. Jerika has never walked, and today her
movement is mostly limited to her head and hands.

Jerika said
she’s in constant pain — about a seven on a scale of one to 10 on her
best days. She expressed concern that her pain and the need for more
invasive medical interventions would grow as her body continues to
deteriorate.

Jerika Bolen and her mother Jen are illuminated by green
fireworks Saturday, July 2, 2016 in Menominee, Mich. Danny Damiani/USA
TODAY NETWORK-Wisconsin;
(Photo: (Photo: USA TODAY NETWORK-Wisconsin))
Lucas, who said she is unaware of whether a child-protection
investigation has commenced, said her organization is not asking that
Jerika be removed from her mother’s care.

“Foster care will not solve this problem,” she said.

But Jerika is in need of mental health care, not additional support for ending her life, Lucas said.

Lucas
said four organizations sent a joint letter to the Wisconsin Department
of Children and Families asking for intervention, and she followed up
with a phone call to Outagamie County's Children, Youth and Families
Division. The other organizations are Not Dead Yet, NMD United and the
Autistic Self Advocacy Network, Lucas said.

Debate began to bubble
as many reached out to celebrate Jerika's life in July. More than a
1,000 people arrived at a prom thrown in Jerika's honor as a last wish.
Police and firefighters provided a motorcade. She received cards and
gifts from around the world and shout-outs from a number of celebrities.

But her decision also drew pleas that she change her mind, including from adults with Spinal Muscular Atrophy.

Jen
Bolen, in a July interview, said those critical of Jerika's decision
fail to understand the depth of medical intervention it’s taken for her
to reach her teenage years.

"I was fighting for my kid," she said. "I never thought I'd be on this side of things."

Lucas,
meanwhile, said Jerika's decision — and the support she's received — is
an important issue to the disability rights community. Those with
disabilities have equal rights to child protection, which includes
efforts to ensure parents are acting in their children’s best interests,
she said.

Though Jerika's disease is progressive, it isn’t
“acutely terminal,” Lucas said, and she questions whether simply
withholding treatment would be sufficient to end her life quickly.

Jerika Bolen laughs with friend Mackenzie Falck as they watch
fireworks together with Haley Paradiso and Hanna Gove during an
Independence Day celebration at Jerika's grandparents home Saturday July
2, 2016 in Menominee, Mich.
(Photo: (Photo: Danny Damiani/USA TODAY NETWORK-Wisconsin))
When it’s a decision of death, “it’s never in the child’s best interests,” Lucas argued.

Jerika’s story is far from the first time end-of-life decisions have drawn controversy.

Perhaps
the most famous case was that of Terri Schiavo, a brain-damaged Florida
woman who was taken off of life support in 2005 after a family battle
and a national debate over decision-making authority.

Diane
Coleman, executive director of the anti-euthanasia organization Not Dead
Yet, compared the Bolens’ situation to that of Julianna Snow, a
5-year-old Oregon girl who was given the choice by her parents on
whether to continue medical treatment.

Snow, who had an incurable
neurodegenerative illness, chose against further hospitalization and
died in June after spending 18 months in hospice care.

Coleman questioned both cases based on their ages. But her
organization views euthanasia as a form of discrimination against the
old, ill and disabled.

“I worry that there’s an attitude in the
health care profession that really writes people off with disabilities,”
she said. “I worry that people like Jerika and Julianna are in the
throes of that, and without adequate support.”

The withholding of
treatment from the disabled was recently subject of court scrutiny in
Wisconsin based on a lawsuit brought by the Disability Rights Wisconsin
organization.

In 2009, the organization sued five doctors from UW
Health over their withholding of treatment from two developmentally
disabled patients, including a 13-year-old boy they had placed in
hospice care. Lawyers argued the boy would have recovered from
pneumonia.

The case was dismissed at the circuit court level, and
in 2014, the Wisconsin Court of Appeals upheld that decision, putting an
end to the lawsuit.

Attorneys for Disability Rights Wisconsin
argued “parents had no right to direct the withholding or withdrawal of
life-sustaining medical treatment to their children who are not in (a
persistent vegetative state.)”

The court rejected the organization's arguments that withholding of care violated the patients' due process rights.

Lisa Pugh, public policy director for Disability Rights Wisconsin, couldn’t be reached for comment on Tuesday.

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